Exploring the experiences and needs in everyday life of spouse carers of persons with dementia
Bibliographic Data
| ID | 24231440 |
|---|---|
| Authors | Marcus F Johansson (0000-0002-8480-190X, Dalarna University), Lena Marmstål Hammar (0000-0003-2511-9502, Mälardalen University), Lena Dahlberg (0000-0002-7685-3216, Dalarna University), Kevin J Mckee (0000-0002-8795-7555, Dalarna University), Christine L Williams (0000-0003-3740-6138, Florida Atlantic University), Martina Summer Meranius (0000-0002-0407-9831, Mälardalen University) |
| Year | 2026 |
| Volume | 21 |
| Issue | 1 |
| Pages | 2680726-2680726 |
| Publication date | 2026-12-31 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | International Journal of Qualitative Studies on Health and Well-Being (JOURNAL) |
| Journal identifiers | ISSN: 1748-2623 • E-ISSN: 1748-2631 |
| Publisher | Informa UK Limited (PUBLISHER • GB) |
| DOI | 10.1080/17482631.2026.2680726 |
| PMID | 42204836 |
| OpenAlex | W7162669005 |
| Language | EN |
| References cited | 46 |
PURPOSE: Spouses of persons with dementia often take on caring responsibilities that can be overwhelming and negatively affect their well-being. To support the development of effective services and promote carer well-being, we aim to describe carer experiences and needs in everyday life. METHODS: Semi-structured phone interviews were conducted with a convenience sample of 24 spouses caring for a partner with dementia in Sweden. The interviews explored experiences of caring for a partner with dementia. Interviews were analyzed with thematic analysis. RESULTS: The analysis generated two themes: "Being consumed by caring" and "Longing to be seen and feel supported". The first theme showed that spouse carers experience a transition from spouse to carer and feel confined in their new situation. The second showed that to be supported, spouse carers need to feel acknowledged in their situation, and formal care must meet their partner's needs, as carers' needs are enmeshed with those of their partners. CONCLUSION: Spouse carers of persons with dementia often feel trapped by caring responsibilities. To feel supported, they need to be acknowledged both as individuals and as part of a couple. Health and social care professionals should focus on maintaining spouses' sense of self and adopt a couple-centred approach.
caregiver experiences · caregiver needs · caregiver well-being · Dementia · formal care services · Selfhood · Social support · Dementia and Cognitive Impairment Research · Family Caregiving in Mental Illness · Nursing care and research
Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050
Thematic Analysis
Problematising carer identification
Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden
Perceived Importance of Types and Characteristics of Support to Informal Caregivers among Spouse Caregivers of Persons with Dementia in Sweden
Hidden caring, hidden carers? Exploring the experience of carers for people with long‐term conditions
Positive experiences in dementia care-giving
Receipt of Formal and Informal Help with Specific Care Tasks among Older People Living in their Own Home. National Trends over Two Decades
Variability in perceived burden and health trajectories among older caregivers
Spousal characteristics and unmet care needs
Is living well with dementia a credible aspiration for spousal carers
| Highly cited | No |
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